Seth & Kristina both grew up feeling different from everyone else. Seth’s mother’s diagnosis of Huntington’s Disease (HD) and Kristina’s pediatric diagnosis of Type I Diabetes seemed to rob them of their childhoods. For them both, life felt like a constant wrestling match with judgement. They realized together, as adults, that although their circumstances and conditions were different, they both felt isolated which made the transition from high school into young adulthood difficult.
After recognizing that they both stood out, they were each determined to advocate for themselves and others. They found that many young adults with various conditions had needs that were not being met year-round.
Young adults with a rare or chronic disease carry many psychosocial burdens beyond the management of their disease: talking with family, friends, and romantic partners about their health condition, planning their future (family and career), and finding responsible peer-support. The transition from childhood to adulthood is often full of uncertainty as they begin to take ownership of their future.
HOW WAS OUR ODYSSEY BORN?
While some disease-specific patient advocacy organizations have begun to acknowledge the needs of this young-adult demographic, there is no organization dedicated to providing year-round social and emotional support services for young adults impacted by rare and chronic conditions...which is how Our Odyssey began.
Seth and Kristina have started Our Odyssey by collaborating with the rest of their stellar Executive Team, strategizing with their amazing Board of Trustees and receiving the wise council of their phenomenal Advisory Council.
Our Odyssey is a #journeytogether and together, the goal is to continue helping young adults find social and emotional support, connect with them, improve their quality of life, and ultimately empower them to take the next steps for a better tomorrow.